That wretched illness wrecked Nigel’s life, but it never lured the joy from his heart or the spirit from his soul

He was a muscle-bound hunk who would have made Popeye jealous. But when motor neurone disease struck, he and his wife Julie fell in love all over again, as she describes in this bittersweet memoir

DEATH toyed with Nigel, my darling husband, for ten years. It dragged its feet as the life dripped from him like water from a tap, leaving him to languish in a world where there is no mercy — his astute, tortured mind entombed in a silenced, paralysed body.

He had motor neurone disease (MND) and dreaded the final stages where he knew he would be both alive and dead. He believed that without choice you have nothing. ‘I’m lucky,’ he would say. ‘I get to choose how and when I die.’

What he — a true man’s man, who lived life to the full, a family man with three children he adored, a cheerful, gregarious character, always smiling and laughing, a popular figure in the pub, rugby club, golf club — chose was to end his days at Dignitas in Switzerland.

I was at his side then, holding his hand, as I had been throughout the years the disease destroyed his body, bit by bit.

I remember the start — how, in November 2006, he came home from golf and complained: ‘ My tongue feels weird. One minute it’s twisting all over the place, the next it’s heavy as a brick.’ His speech was slurred.

Paula, my sister, who lives in the flat above ours in our Victorian house in Scarborough, noticed the change. ‘He sounds drunk,’ she confided to me. ‘ Do you think he’s had a stroke?’ I jumped like she’d slapped me across the face and snapped, ‘Don’t be stupid!’ He was only 52. I failed to mention I had been thinking precisely that.

Typically, Nigel shrugged it all off, putting it down to stress from running his successful scaffolding and roofing business. But I eventually persuaded him to see a speech therapist, who gave him a reading test.

He struggled, sounding like a kid reciting tongue-twisters with a gobstopper in his mouth. Then his mouth refused to open, his lips pressed together as though glued.

He forced himself to speak but what came out between anguished gasps was like the choking cry of someone buried beneath rubble, like gravel scratching on glass. ‘You need to see a neurology consultant,’ the therapist said. ‘Soon.’

FOR YEARS, ever since meeting him in 1975, I believed my macho husband was invincible.

He was of average build but, beneath his brown leather jacket, tight-fitting T- shirt and thighhugging denim jeans, lurked one powerful, muscle-bound hunk, with a body sculptured to perfection from a lifetime of physical hard work. Popeye would be jealous of Nigel’s muscles.

His working days were spent swinging on scaffolding structures with the confidence and agility of a gibbon, at heights where [steeplejack] Fred Dibnah would break into a sweat. His workplaces were motorway bridges, high-rise tower blocks, churches, cathedrals, roller coasters and the odd castle.

Enshrined in my memory is him working on a building in the centre of Leeds and me catching sight of him on my way to work. He knew what bus I’d be on and was there, hanging upside down, waving his arms and showing off. ‘That’s my boyfriend,’ I said to the chap next to me. ‘Isn’t he amazing?’

But, as I was slowly finding out, he was as conquerable as Goliath.

He had tests, examinations, brain scans, a biopsy. Three months of wilting in one wishy-washy hospital waiting room after another. And now here we were with a neurology consultant saying even more tests were needed before he could be sure.

‘But what do you think it could be?’ I ventured — the question we hadn’t dared ask before. ‘Have you any idea?’ Of course he had. It was written all over his face. ‘ You’ve asked, so I must tell you.’ He suspected motor neurone disease.

‘What’s that?’ asked Nigel, a puzzled, but unconcerned expression on his face. He’d never heard of it.

‘This is a disease,’ the doctor explained, ‘where the motor neurones, the part of the brain that controls muscle movement, slowly stop working. The cause is unknown. The condition is lifelimiting and there is no cure.’

Nigel absorbed the words. He didn’t move, his face impassive, before coming straight to the point. ‘How long have I got?’ ‘Three to five years.’

Nigel drew a long, slow breath. ‘Right,’ he said. Moments like this are not what you imagine. There is no darkening sky, no thunder. The sun still shines. The world doesn’t hold its breath. Nothing has changed. And yet everything has changed.

We listened, numb, as the doctor said he would contact Nigel’s GP and we should expect to hear from a physiotherapist, occupational therapist and someone from St Catherine’s Hospice.

The hospice? That’s for dying people. Look at him, my invincible husband, so strong, so fit. No way is he dying. And yet, however many doctors, therapists and professors were involved, from this point on, there was only one way this was going to end — with Nigel’s death.

What are you supposed to do when told you’re dying? There are no instructions, no guidelines.

‘Let’s grab a drink,’ said Nigel. ‘The Black Swan is round the corner.’ In the pub he stared at his pint, disbelief in his eyes.

‘I can’t lose you,’ I said, my voice breaking, ‘I love you.’

He kissed the end of my nose. ‘I love you too,’ he said.

I marvelled at how calm he was, how controlled. ‘Julie,’ he said, ‘everybody gets a kick in the bollocks at some point. This is mine.’

The clenching and unclenching of his jaw signalled he was preparing to take this thing on.

‘We’ll be OK’ he whispered. ‘We’ll survive this.’ He stopped and, typically, laughed. ‘ That’s not true. I won’t survive this. But we’ll be fine. You and me. We’ll cope.’

But would we?, I asked myself. Where would we find the strength? I saw myself standing at one end of a collapsed bridge, striving to picture the other side of this expanse of infinite darkness.

As Nigel drove us home I wondered how long it would be before he could no longer grip the wheel. How long before walking was beyond him? How long before his body was consumed, withered and destroyed? How long before his speech was unintelligible?

That first night we barely slept. At 3am, I found him at his computer, clicking on ‘MND’. We learned it is a rare disorder, affecting around 5,000 people in the UK at any one time. It strikes at random. PRINTED AND DISTRIBUTED BY PRESSREADER